An Open Letter to Health and Human Services & Texas Legislators

Dear Health and Human Services Commission (HHSC) Director and Texas Legislators:

I am writing to you today as a parent, therapy provider, and concerned citizen regarding the significant delays Texas Medicaid is currently experiencing with authorizations which are drastically affecting continuity of care and quality of life for my son and thousands of Texas children. These delays seem to be a direct result of recent legislation passed to decrease funding to the Texas Medicaid program by approximately $350 million (Rider 50). While the proposed budget cut is currently on hold due to a court injunction, it would appear HHSC has implemented these cuts in the form of delaying authorizations in effort to save the program money.

As a provider, here is just one such example. I received an authorization September 15, 2016 at 7:15 pm via fax. Our office submitted this authorization request on August 1, 2016 – 46 days ago. This letter is dated September 1, 2016 and the authorization period begins on August 15, 2016. The Texas Medicaid Provider manual states that services will not be compensated for without an authorization and authorizations will not be backdated, so therefore, we as providers, must tell our therapists that they cannot see their patients until authorization is received or we risk not receiving payment for services rendered. In this case, our therapist has not seen their patient since the evaluation was performed on August 1st. Now, here we are 46 days later and we find out that 15 days ago our authorization was approved and backdated an additional 15 days, so our patient has missed a month of therapy because we were not notified in a timely manner. Furthermore, our request was for two visits per week and the reviewer denied our request suggesting our patient only required one visit a week due to “slow progress toward therapy goals. “ This is only one example of many we have personally experienced and the countless more we know other patients and providers to be currently experiencing across the state. On average, our authorization requests are taking 4-6 weeks to be approved, if no additional information is requested. If Texas Medicaid & Healthcare Partnership (TMHP)  requests additional information, the delay is an additional 2-3 weeks, at minimum. Per the TMHP manual, we cannot submit authorization requests more than 30-days prior to the expiration of a current authorization rendering us unable to be proactive and submit requests 4-6 weeks in advance. As a result, with the current timeline of approval our patients are experiencing 2-3 week lapses in therapy service, and sometimes greater.

These delays are detrimental to the health and well being of our patients. One month without therapy can cause significant regression for chronically ill and long-term disabled children. To add insult to injury, our patients are experiencing regression and loss of skills due to authorization delays and when our request is reduced to once a week visits instead of twice a week, our patients do not have adequate service to reach their prior level of skill nor continue to make significant progress toward goals. Progress is slow because our therapists have to take several steps backward to get our patients back to where they were before there was a lapse in treatment. And then attempt to make progress toward the goals previously set.

The authorization delays directly coincide with the time period in which the court issued an injunction to delay implementation of Rider 50, which would reduce payment for therapy providers. Thousands of children across the state are experiencing lapses of 3 weeks or greater, which, in turn, is undoubtedly saving the state a great deal of money. This seemingly underhanded attempt to implement the budget cut despite court rulings is gross negligence and directly impacting the lives of our children. For many children, therapy is required to maintain current level of function, to decrease the chance of contractures or serious injury, to ensure safety in the environment, to improve and strengthen fine and gross motor skills, to teach speech, to correct speech deficits, to ensure safe feeding, to improve quality of life by teaching skills that will allow children to interact with their peers, and for so many other reasons. Therapy is a cornerstone of ensuring proper development in children.

Additionally, providers have tried to address these concerns with TMHP reviewers and we are told that authorizations are going to nurse review and there is no time period for which they must be approved. Meanwhile, parents are calling TMHP and the Medicaid Ombudsman’s office and being told that authorizations should be approved within 3 business days. As a result, our patients assume it is the providers delaying the authorization and we are losing the trust and rapport we have worked hard to earn from our patients.

The lives of our state’s most vulnerable citizens seem to constantly hang in the balance while legislators and state departments toy with policies looking to save money all while harming the lives of children. It is clear that the powers that be do not understand the needs of special needs community nor do they know how to meet those needs. As a result, children across the state are currently without the necessary services that would improve their quality of life. This issue needs to be rectified immediately. As it stands, the state is currently profiting off of the steady decline in health and absence of service for our children, which is simply abhorrent, to say the least.

I hope your respective offices will look in to the matter and ensure corrective action will be taken. My son has a life-long disability and depends on therapy services to provide him his best chance at success in life. The issues I continue to see with Texas Medicaid provide me with little hope for his future. I know that one day soon, his service will be denied, as it has been for several of our chronic patients, because what we see as leaps of progress, you deem to be “too little” progress. While Texas is historically a pro-life state, the state places little value on the lives of the disabled, which is evident when legislation passes that can directly harm their lives. It is unfortunate when families like ours rely on the Texas Medicaid program, even as a secondary insurance (as we do), because without it we simply could not afford the staggering costs associated with caring for a disabled family member, only to have that crucial support ripped away due to systemic downfalls and budget cuts.

As you prepare for the next legislative session, it is my hope you will have greater consideration for the lives of your most vulnerable citizens. They are your sons, daughters, nieces, nephews, grandchildren, and they desperately need you to speak up for them in these matters because they deserve the right to a full life. They deserve access to quality healthcare, to programs that enrich their lives, to services that will enable them to become successful tax-paying citizens. We, the families, the providers, the taxpayers, hope for a resolution – sooner rather than later.

Sincerely and with hope,

A Texas Mother looking out for her son and the lives of all Texas children

 

// This post was written by our office manager, Vanessa Garcia, and originally appeared on her personal blog. We at Growing Places, are just as upset by these delays as many of our parents and want our patients to know that we are fighting these changes right along with you. 

Growing Places Thanks YOU

GPTSgivethanks

’tis the season of thanks, and here at Growing Places, we have so much to be thankful for this year. We are continuing to grow as a company and have added some fantastic therapists to our team. Many of our patients have seen great success this year and we are so grateful to play a part in those achievements. We asked our therapists to share with us what they are thankful for and received some really great responses.

Doug LevinePhysical Therapist and Growing Places Owner

I have so very much to be thankful for for being a therapist I’m not sure where to begin.  I feel lucky and privileged to have a job where I can, hopefully, improve the lives of others.  I do not take this for granted at all.  I feel that families with children with special needs already have many hurdles to overcome, so if I can make things a little easier, give them comfort, help them to share in the little or big triumphs for their kids, then I have done my job.  I see what I do as so much more than strengthening, or stretching, or helping achieve developmental milestones.  Many times I am a shoulder to cry on, someone to hug and share joy with, a social worker, someone to help navigate endless paperwork or a difficult and confusing medical system, or help share many wonderful programs that are in the community. I wouldn’t trade my job for anything.  It has become a passion and I truly love it every day.

Mary Elizabeth and one of her "babies"

Mary Elizabeth and one of her “babies”

Mary Elizabeth Parker, Physical Therapist

I am thankful that I have the physical ability to get out of  bed each day and work with these wonderful children and families. What they give back to me is a hundred fold of what I give to them. I am truly blessed!

Katherine Garcia, Speech-Language Pathologist

My job humbles me, and I am in awe of the children and families with whom I work.  I am the speech therapist of some of the hardest-working, most courageous, and most fun people I know.  I work with families who face the unknown with grace, determination and hope.  I work with children who seemingly have to climb a mountain in the dark to utter their first sound or word and who are willing to climb that mountain again and again to move forward.  The best part of my job, and what I am most thankful for, is that I get to play a small role in the lives of these amazing people, my patients and their families.

 

Brandy Gray, Speech-Language Pathologist

I am so thankful for a career that is so rewarding. Whenever I hear a parent excitedly say “My child said ‘mama’ for the first time!” or “My child clearly articulated his sister’s name.”, I am so happy that I chose this career. These kids work so hard to overcome challenges and have inspired me to work hard through challenges as well.

Carri Baker, Speech-Language Pathologist

I am thankful for all of the families who have let me into their lives and to meet their little fighters. I am constantly amazed at the strength and love given to their children and families. For every family I have shared my knowledge with, I have learned something from them as well. Whether it is a new technique/strategy (man, parents are smart!), a new way to adapt and be strong in a crazy situation, or how to keep it all together and manage stress.

Dana Chmiel, Occupational Therapist

I can’t begin to find the words to express what it feels like to be of service to others.  The best word that that I can come up with is ‘Privileged.’  I am so thankful to the many children and families who have allowed me to be a part of their lives.  I’d bet most of these children and their families don’t realize that each and every experience that we have shared has been a gift to me.  Over the course of this past year, I have embraced something that I wish for every therapist to think about and put into practice each and every time that they work with a child:

 “If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of.  There is something of yourself that you leave at every meeting with another person.”  -Fred Rogers

Make it a point to tell the children you work with that they matter, that they are good and that YOU are proud of them.

 

Proud of her monkey bar success!

Proud of her monkey bar success!

Willow Dea, Occupational Therapist

As a therapist, I’m always grateful for the opportunity to provide solutions for each child and family, and to design novel experiences that engage that child’s imagination and motivation. There isn’t a day that goes by that I don’t reflect on my gratitude of the sheer joy of playing with children in ways that change their ability to be successful. One of my patients’ had a goal to use the monkey bars. We did upper body strengthening for two and half months during each sessions – 15 modified knee push ups and 15 tricep lifts – and two weeks ago, we tried the monkey bars: She did it! She was able to complete two sets of climbing across with minimal support! The look of triumph on her precious little face was unforgettable and for that I’m grateful.

Stephanie Springfield, Occupational Therapist

I am so thankful for all of the kids and people my profession has allowed me to work with. A week does not go by that I don’t say “I am so lucky to get to do what I do”. Each person I meet and work with has so much to offer and continues to enrich my life daily. I say with all seriousness that I am especially thankful for the opportunity to work for Growing Places. I have not worked for a better company as a therapist or not. My heart is full.

 

Braxton walking independently with his PTA, Gil

Braxton walking independently with his PTA, Gil

Vanessa Garcia, Office Manager

I have the unique position of being on both the patient and provider side of therapy.  My son currently receives Physical Therapy from GPTS therapists and has seen them since he was about 8 weeks old. He turned 3 this summer and has made huge progress with the support and guidance of his wonderful therapists. He’s recently started walking independently and the sheer pride on his face and the faces of his therapists for his success fills my heart more than they could ever know. In the past year, I’ve learned so much about each of the therapists who work for Growing Places. I have always loved our therapists, but now that I have had the opportunity to work for this company, I’ve learned that ALL of the therapists are simply amazing. The amount of love and passion these guys have for their job and the families they serve is incredible. I’m thankful to have a job that gives me the flexibility to adjust my schedule around my son’s therapies and specialist visits. I’m also grateful to be able to pay-it-forward by matching families with therapists and providing them with resources to care for their children. I know firsthand that raising a child with special needs can be very difficult at times and I hope that we can help ease the hard times by providing quality care and support.

 

From the Growing Places Therapy family to yours, we wish you all a very Happy Thanksgiving! Thank you for letting us be a part of your child’s lives.

Because of AAC: Joshua’s Story

Children begin communicating long before they learn verbal speech. For children with complex communication needs, speech often does not come at the time or in the way that the family expects. The family begins to understand a child’s non-verbal communication, gestures, cries, and squeals, but they never truly know what their child is thinking or what they want or need. Parents do their best to guess and attend to all of a child’s basic needs, but without speech, a large part of their child is unknown to them. Thanks to the many technological advances, Augmentative and Alternative Communication (AAC) is now more widely available and easily accessible. AAC devices allow a child to express their wants and needs in so many ways. There was once a time when dedicated communication devices were so expensive that families could not purchase the one thing they needed for their child to become part of the world around them. There are now an abundance of Speech applications for iPads, Androids, and other tablet devices, in addition to the many dedicated devices used for AAC, available in nearly every price range. Access to high tech communication is now easier than ever. We have had the pleasure of working with many families whose lives have been enriched by AAC in some way, shape, or form. Today, we are sharing the AAC journey of our friend Joshua.

Joshua’s mom, Dora, writes:

Josh Using TobiiI am one of the many parents out there who felt like my speech-delayed child had so much to say, but very few ways to express himself. My son knows some basic ASL, which helped to reduce some of the speech barriers, but I still often found myself wondering what he was trying to tell me and if he had more to say. His speech therapist suggested we get a Dynavox device, but unfortunately we could not go that route due to the price of the device. Fortunately, we were able to take another route and we bought my son a small tablet with the Tobii Sonoflex App.

 Josh smilingWe are so thankful that his speech therapist suggested we try out an AAC device. Tobii Sonoflex has helped my son to expand his communication, learn, and even socialize at school. My son carries his tablet to school everyday and I’m happy to say that he loves it!! I forgot to send his AAC device to school one day and his teacher wrote a note asking if I could please send the device to school the next day, which shows me that they, too, benefit from this device. Tobii Sonoflex is user friendly and can be customized to your child’s needs. The AAC device has even encouraged my son in his potty training. His favorite customized button is telling us how old he is and what school he goes to!! I love how the AAC device puts a different kind of smile on my sons face!            

 

We also asked his Speech-Language Pathologist, Jayme Ferguson, about her journey with Joshua and what she’s seen now that AAC has been introduced. She writes:

Josh and JaymeJosh was the ideal AAC candidate for a speech therapist. His receptive language skills were above average and his ability to communicate nonverbally via sign language, facial expression, and body language was incredible. Josh was also very savvy when it came to any electronics, as most children are these days!

 I initially spoke with a Dynavox representative regarding their new Compass software. We reached out to several resources for funding with no luck. After a summer of unsuccessful attempts for funding, I began looking for more affordable options and found Sonoflex by Tobii Software. We were able to get Josh an Android tablet with this communication application just in time for school.

 I remember the first time I brought the tablet back to Josh after customizing it and adding pictures of family members, his favorite toys, personal needs, etc. Within 15 minutes, Josh was able to tell me his name, age, school, and tell his mom he loved her. It was truly incredible how AAC helped my friend Josh effectively communicate things he has been wanting and trying to say for years!

 This is only one of the many stories I could tell justifying the confidence and freedom AAC gives so many of the children I have been fortunate enough to work with. Happy AAC month!

 

Because of Augmentative and Alternative Communication Joshua can now truly be part of the world around him and express himself in so many ways. It is so wonderful that Joshua’s family had so many options available to them. When one option did not work, they did not give up. New apps are added to the app stores almost daily and each has their pros and cons. It is best to work with your Speech-Language Pathologist to find an app that is best for your child. Remember, there is no one-size fits all for AAC! That is the beauty of technology. Every app caters to a different child and the same app can be used in many different ways for different children. The important thing is to start and immerse yourself and your child to unlock everything they have wanted to say for so long.

Making AAC Accessible For All

AACaccess

Communication is how we interact with the world around us. Without communication, we are disconnected from that world. As a pediatric speech-language pathologist, I help children communicate. When the children I work with have severe limitations in their oral communication, I help families find an alternative means for their children to communicate via AAC. AAC stands for Augmentative and Alternative Communication. The American Speech-Language-Hearing Association’s (ASHA) definition of AAC includes “all forms of communication (other than oral speech) that are used to express thoughts, needs, wants and ideas.”   AAC includes, but is not limited to: pictures, facial expressions, gestures, sign language, communication boards, and electronic devices. My focus today is on high-tech electronic devices and access. Access refers to the way a person can physically access a device to use it. Sometimes concerns about accessibility cause families and therapists not to pursue use of electronic devices. A child’s deficits in motor, cognitive, visual, and/or hearing skills are seen as a barrier preventing use of an electronic device. Although limitations in multiple areas make accessing a device more challenging, there are multiple means of access that should be evaluated and trialed before determining that an electronic device is not a good option for your child.

When working with your therapist to find the best mode of communication for your child, be sure to consider your child’s ability to access an electronic device through the following different means:

1)     Touch: Touch is a direct means to access pictures or letters on an electronic device by touching the screen.   To use touch to access a device, the child must be able to use a finger to touch specific pictures or letters on the screen.

Factors to consider: size of symbols, number of symbols, positioning of child and device, use of keyguard or touchguides, device-specific settings for acceptance/release time.

Examples: PRC Accent and ECO series, Dynavox Vmax, Tobii I-Series, all communication apps on ipad (i.e., LAMP, Speak for Yourself, Sonoflex, Sounding Board, Dynavox Compass, Proloquo2go).

2)     Alternative Mouse/Joystick: The child uses an external device to directly select pictures or letters on the device. To use an alternative mouse/joystick, the child must be able to manually control the external mouse/joystick to select specific keys.

Factors to consider:  type of external mouse/joystick; positioning of child and device; highlighting keys when selected; changing cursor size, shape, color.

Examples: PRC Accent and ECO series; Dynavox Maestro and Vmax, Tobii I-Series

3)     Headtracking: A small, reflective dot sticker is placed on the child’s forehead or glasses, and a wireless optical sensor interprets the movement of the dot. The child moves his/her head to directly select keys on the screen. To use headtracking, a child must be able to move his/her head to select specific keys.

Factors to consider: positioning of child/device; changing settings to accommodate for fine or gross head control; changing the cursor size, shape, color; hiding keys in the early stages.

Examples: PRC ECO series

Here is a short video of one of my patients working with Tracy Custer, from Prentke Romich Company, and learning how to use a headtracking communication system:

 

4)     Eyegaze: The child directly selects a picture/letter on the screen by looking at the desired key. The device uses a camera to follow the child’s pupil. To use eyegaze, the child must be able to look at the desired key.

Factors to consider: positioning of child and device; screen size; tracking eye (one or both).

Examples:  PRC Accent and ECO series, Dynavox Maestro and Vmax, Tobii I-Series.

You might recall seeing an eye gaze device during the Superbowl last year.  Steve Gleason, a former NFL player now living with ALS (commonly known as Lou-Gehrig’s Disease), starred in a Microsoft commercial using his communication device and explaining how he uses eye gaze to communicate. AAC enriches the lives of both children and adults. Here is the ad if you have not seen it previously.*

* This Microsoft commercial is shown as an example of someone using eye gaze technology and not as an official endorsement or paid advertisement from Growing Places. 

5)     Scanning: The device presents choices visually and/or auditorily, and the child pushes an external switch when he/she hears or sees the choice he/she wants to select. A switch can be operated using a hand, head, or another body part with a reliable movement pattern. To use scanning, the child must be able to physically operate a switch and attend either visually or auditorily to choices offered and then select desired choice.

Factors to consider: positioning of child and device, settings for scan speed and acceptance and release times, settings for auditory and/or visual feedback.

Examples:  PRC Accent and ECO series, Dynavox Maestro and Vmax, Tobii I-Series. Special switches can be purchased for the iPad, but not all communication apps work with these switches. Talk Tablet Neo and Sounding Board can be used for single or two switch scanning.

With the number of speech-generating devices on the market and the prevalence of AAC apps on the iPad, there is no shortage of options. Multiple devices should be trialed, and different means of access should be considered.   Ideally, the process will involve family members, caregivers, teachers and therapists. Selecting an appropriate speech-generating device and determining the best means of access takes time, patience, and teamwork.

There are many AAC options, but here are just some of the companies manufacturing speech-generating devices:

 

Sources

Most of my information came from a training I attended called: Strategies for Access & Language Integration by David Kay, M. Ed, OTR with Prentke Romich Company.

Communication Services and Supports for Individuals With Severe Disabilities from asha.org

 Augmentative and Alternative Communication (AAC) from the ASHA website.

 

// Author: Katherine Garcia- MA, CCC-SLP

Katherine received her Bachelor of Arts in English from the University of Texas at Austin. She taught high school English before returning to school to become a speech-language pathologist. She received her Masters of Arts in Communication Sciences and Disorders from the University of Texas at Austin. Katherine holds the Certificate of Clinical Competence awarded by the American Speech-Language-Hearing Association and is licensed by the State of Texas to practice speech pathology. Since earning her Master’s degree, Katherine has been a pediatric speech-language pathologist in the home-health setting. She is interested in developmental delays and disorders, early language acquisition, social communication, and augmentative and alternative communication (AAC). Katherine is Hanen certified to teach It Takes Two to Talk and More Than Words. She has attended continuing education courses pertaining to feeding, apraxia, autism, and early intervention. When not at work, Katherine enjoys spending time with her husband and two little girls.

Wheelchair Accessible Swimming Pools

Wheelchair Pools

Summertime in Texas means 100 degrees days and finding any means necessary to keep cool.  Swimming is, of course, at the top of everyone’s list.  Aside from staying cool and out of the heat, swimming also has many therapeutic properties and we highly recommend swimming to a majority of our patients.  We do caution our patients with high muscle tone with pools that have very cold water, as the cold water can cause muscles to increase in rigidity.  There are several heated pools in and around Austin that would be best for patients who have high muscle tone.

We were recently asked about swimming pools with wheelchair access either by a ramp or chair lift and are happy to share what we have learned with all of you! We started by asking the great folks at Free Fun in Austin to ask their readers for contributions to this list, to our surprise, most of the Austin pools were listed.  After a call to the Austin Aquatics office, we learned that the City of Austin installed chair lifts at nearly every pool in Austin before the 2014 season began! We called and emailed surrounding areas to verify accessibility as well and have compiled this list.

Initially, we were calling every pool individually and some of the locations we spoke with mentioned that their chair lifts were under repair, so we do advise that you call ahead to make sure the lift is available and functional.

If we missed one, please let us know and we will update the list!

Austin Pools

This list of Austin pools is copied from the City of Austin Website. For a full list of pool features including whether or not the pool is heated, the City of Austin provides this great comparison chart. Entry fees vary from Free to $5.

North Austin Facilities

East Austin Facilities

South Austin Facilities

West Austin Facilities

YMCA Austin – Verified with Program Manager that ALL Austin YMCA locations now have a wheelchair lift available.


Georgetown Pools

Georgetown Recreation Center – 1003 N Austin Ave, Georgetown 78626 – 512.930.3541 – Indoor pool. Wheelchair lift available.

Hays County Pools

Kyle City Pool – 1100 W Center St, Kyle 78640 – PH: 268.5326 :: Wheelchair lift available. Entry fee $1 – $4

YMCA Buda – 465 Buda Sportsplex Dr, Buda 78610 – PH: 512.523.0099

Pflugerville Pools

Gilleland Creek – 700 Rail Road Dr, Pflugerville 78660 – PH: 512.990.4392 – Heated pool. Accessible via beach/slope entry

 

Round Rock Pools

Highland Horizon – 416 Highland Horizon, Round Rock, 78717 – PH: 512.341.7336 – Heated pool. Accessible by ramp. No chair lift. Entry fee $1 – $4

Rock ‘N River Family Aquatic Center – 3300 Palm Valley Blvd – PH: 512.671.2737 – Wheelchair lift available.

Sendero Springs –  4203 Pasada Lane, Round Rock 78681 – PH: 512.218.1495 – Heated pool. Wheelchair lift available. Entry fee $1 – $4

 

Fun Summer Activities That Double as Therapy

Summer Activities

 

One of the greatest advantages to home based therapy is using toys and equipment in the child’s natural environment to create a plan for success. That Fisher-Price activity center can be used for much more than entertainment for your child; your Physical Therapist can use it to promote standing and coordination, your Occupational Therapist can use it to help with fine motor skills like pressing the buttons or turning knobs to make it work, and your Speech Therapist can help with language by discussing what colors and objects are on the activity center. Therapy can be incorporated into many activities throughout your child’s day and it doesn’t have to feel like work for either of you!

We’ve asked our therapists to help us come up with some fun activities to get you through summer that keep your children entertained, but also help with therapy goals. It’s much easier than you think and doesn’t take any formal training. These activities are great for anyone to supplement private therapy over the summer, for those who may be taking a break from formal therapy this summer, or even for you to try on vacation.

 

Physical Therapy

MEP and Gavin

Therapy in the Park

Our PTs, Laurie Brophy and Doug Levine, both recommend visiting the local park (in the morning or early evening to avoid the heat) for improving bilateral coordination. Helping your child move from one apparatus to the next and working on climbing can be very helpful. Swinging is good for improving arm strength, abdominal strength, and can calm the vestibular system.

The park can be used in a variety of ways to help work on different therapy goals such as pulling to stand, cruising along ramps, and reaching across midline to manipulate levers and knobs.

There are also a few adaptive playgrounds around town with equipment for children of all abilities, including wheelchair swings!

If you have a park nearby, you can always ask your therapist to meet you there and have a PT session at the park!

Gil (PTA) and patient during Aquatic Therapy

Gil (PTA) and patient during Aquatic Therapy

Swimming is also highly recommended over the summer. For one, it’s a great way to stay cool, but it is also very beneficial for therapy. The unique properties of water allow for greater buoyancy and reduce body weight, which allows for greater range of motion and can reduce discomfort of certain positions. Water can also provide resistance that is beneficial for gross motor skills like walking. There are a variety of exercises that can be done in the pool to help restore function and calm the body. Many of our therapists are also trained in providing Aquatic Therapy. If you have access to a pool, discuss the possibility of adding Aquatic Therapy to your Physical Therapy plan this summer.

Your trip to the grocery store could also be good for a sensory rich experience and therapy goals. Have your child reach, bend, and stoop to help get items off the shelves.

 

Occupational Therapy

Fingerpainting ABCs

Practice writing letters in finger paint

While no one likes to think about school over the summer, it is still important to work on things like reading and handwriting in preparation for the next school year. Handwriting work doesn’t have to simply be grabbing a pencil and lined paper to work on drills. Our OT, LeAnn Pigulski, recommends using Handwriting Without Tears Methods for working on penmanship. Try practicing handwriting by writing letters in the sand, forming letters in water (pool, ocean, water sensory table), forming letters in bins of rice, fingerpainting letters, forming letters whip cream or shaving cream, the possibilities are endless. Going outside with sidewalk chalk is also a good idea for drawing, writing, and playing games like hopscotch. These help with fine motor skills, motor planning, and coordination.

On long drives, things like mazes, word finds and puzzles can help with visual processing and keep the kids busy. (LeAnn Pigulski, OT)

Another OT, Willow Dea, states setting up learning stations at home can be another great way to incorporate therapy and also keep the “school routine” going at home. Encouraging movement through three or four stations a day can be enough to keep your child used to the routine of school, but also helps with motor planning.

Set up a station for coloring and drawing

Set up a station for coloring and drawing

Possible stations for fine motor activities could be: Picking up coloring books or printing pictures from the internet of your child’s favorite characters and encouraging them to trace or try and draw pictures free hand. Take a trip to Half Price Books and set up a reading station. Writing stations to practice writing letters to friends or making cards for friends would also be good for your child. Arts and crafts are always good practice for fine motor and visual motor skills. You can create crafts from household objects or pick up some kits from Target. The dollar spot always has puzzles, painting kits, and other fun activities.

Gross Motor stations are also important to include and could be something like setting up an obstacle course using basic toys such as a hula-hoop, pillows, blanket, soccer ball and/or an indoor trampoline. Work with your child to create challenges like doing a certain number of jumps, squats, crawling under objects, rolling over, tossing, kicking, balancing, squeezing and then finishing the course. Drawing the steps out can help children who have trouble with sequences and motor planning. Start with 3 or 4 steps and then increase as your child can handle. Jumping rope, swings and slides are also great! Large therapy balls are good for seated balance or full on exercise based games for increasing shoulder stability or postural stability.

Ocean Sensory Bin

Ocean Sensory Bin

Sensory Bins are always popular for working with different textures and help with visual stimulation/processing and can also help language. Simply take a Tupperware bin or box and fill it with rice and then add small items for your child to find. Ocean themes are great for summer, find small toys like fish, ocean animals, seashells and have your child find them in the rice. You can also use water with a few drops of food coloring. Sand is another option for sensory bins.

 

 

Speech Therapy

There are many ways to include speech and language development throughout the day. Simply talking about activities and asking open-ended questions help to encourage language.

Visit the local library

Visit the local library

Our Speech Language Pathologist, Angela Murphy, recommends taking regular trips to the public library this summer. There are so many ways to target language and speech sounds through books. Using literature allows practice on goals while making it easy to incorporate into daily routines. Here are some helpful links:

This link has some ideas for specific books to use for speech goals with helpful PDF printable lists. http://consonantlyspeaking.com/posts/2012/07/abcs-4-slps-b-is-for-books-lists-of-books-to-use-in-speech-language-therapy

This is a great list for books that target specific sounds, also printable! http://twomeyspeechtherapy.com/lib/pdf/Articulation-Books.pdf

If you are taking a road trip this summer, our SLP Meghan Gale recommends playing I Spy on long car rides to help build vocabulary and grammar skills.

The Alphabet game is also good for recognizing letters, words and sounds. Start with the letter ‘A’ and ask your child to find a word that starts with ‘A’ by looking at road signs, billboards, license plates, and businesses. Move through the alphabet until you get to Z, some of the letters are trickier than you think. This will keep them busy on long trips, but also helps build language and encourages visual scanning and processing.

Use your flashlight to search for vocabulary words or sounds

Use your flashlight to search for vocabulary words or sounds

Another SLP, Jayme Ferguson, recommends playing Flashlight Hide and Seek outdoors. Tape pictures of vocabulary words or words with target sounds in them to the trees, fences, patio furniture and then use a flashlight to find the pictures. When the child finds the correct word or sound, you can prompt them to put the word in a sentence, practice the target sound, or tell a story using the target word. You could do the same thing indoors, but getting outside when it’s cool in the evening can be a lot more fun.

 

Therapy doesn’t have to be all hard work. Talk with your therapists about other fun ideas you can easily incorporate to your daily routine.

April 2014 Family Events With Special Needs In Mind

Family Fun

There are several fun events coming up this month for families of children with special needs.  Here is a list of several events, Easter Egg Hunts, and Sensory Friendly Movie showings!

 

Saturday, April 12 : 10:30 am – Let’s Play! Hosted by U.R. Our Hope

U R Our HopeU.R. Our Hope is a local non-profit that assists families on the journey to diagnosis and helps those with a rare diagnosis navigate the healthcare system.  The group meets once a month at local restaurants or parks to allow for face-to-face support for families who have a child who is Undiagnosed or Rare.

This Saturday, U.R. Our Hope is meeting at the Play for All Abilities Park in Round Rock, TX. All are welcome to join in the fun! If you are interested in learning more about U.R. Our Hope and their services, simply join a meeting or visit their website.
 
 
 

Saturday, April 26th : 9:00 am – 1:00 pm – Easter Seals Ability Fair and Walk

Easter Seals FairEaster Seals Central Texas Ability Fair and Walk is a fun, family-friendly event for all ages and abilities. The event kicks off with a Walk at 9:00am and teams can raise money to benefit our mission.

The Ability Fair starts at 10:00am. Admission to the event and activities are free. Activities include a disability resource fair, inclusive games, petting zoo, pony rides, food and more.

Visit the Easter Seals Events website for more info!
 
 
 
 
 
  
 
 
 

Saturday, April 26 : 11:00 am – 2:00 pm – Sammy’s Super Carnival!

Sammy's Super CarnivalSammy’s House will be hosting an adaptive carnival designed to include children of all abilities. The carnival will be free and open to the public as well.

Food will be available for purchase.

 

Sammy’s House is located at:

2415 Twin Oaks Drive
Austin, 78757
 
 
 
 

Sunday, April 27 : 10:30 am – 12:00 pm – Family Play Day Hosted by Austin Area SPD Alliance

Come by for a judgement-free, SPD group play day on April 27, 2014. There will a play-scape, bouncy house, small trampolines, “rollercoaster” for toddlers, and free food and treats provided by Better Bites Bakery. This is a great opportunity to meet other families with Sensational kids and come together as a community to play and have fun, informal environment. Please check out the Austin SPD Calendar for contact information and additional details.

 
 

Sunday, April 27 : 11:00 am – 4:00 pm – Join the Pride at Cameron Park Zoo

Join the PrideJoin us for Join the Pride, a disability resource fair for all ages at Cameron Park Zoo on Sunday, April 27.

CSNN and the Waco Mayor’s Committee for People with Disabilites will help cover the cost of tickets for families with children with special needs.

Preregistration is required to take advantage of the free tickets.

You may register for the event here or by calling the CSNN office at 254-933-7597.

 
 
 
 
 
 
 
 

Easter Egg Hunts

Saturday, April 19th : Bannockburn Easter Eggstravaganza

2014-Eggstravaganza-850x320_No-Times

Please join us Saturday, April 19 on one of our three campuses for Bannockburn’s 3rd annual Easter Eggstravaganza!  This is a free gift to the community and is for boys and girls from babies through 5th grade.  Free Easter egg hunts, bounce houses, face painting and Easter photos as well as free refreshments.  We will also have a special egg hunt for our children with special needs.

Times for the Eggstravaganza:
South Austin Campus (7100 Brodie Lane)  9:00 AM to 11:00 AM
Dripping Springs Campus (264 American Way)  1:00 PM to 3:00 PM
Manor Campus (407 E. Eggleston Street)  2:00 PM to 4:00 PM

 
 

More Easter Fun:

Here is a great list from Free Fun in Austin showing all of the Easter Egg Hunt opportunities! Note that just because these do not specify “Special Needs” does NOT mean you and your family are not welcome! Your kids are kids FIRST and deserve to have some Easter fun.  Don’t be afraid to join in.
 
 
 
 
 
 

Sensory Friendly Showings of Rio 2

rio2
 
 
 
Saturday, April 19 : 10:00 am – Barton Creek Mall

Tickets cost $6

For a list of future showings, visit the AMC website.

 
 
 

Saturday, April 26 : 10:00 am – City Lights Theatres Georgetown

Tickets cost $3.50 ( adult attendant required & will be admitted free)

Special Movie Treat for an additional $3.50
Includes a 44 ounce popcorn & a 12 ounce drink

Located at:
420 Wolf Ranch Parkway
Georgetown, TX 78628
512.868.9922

 

Respite Care for April 2014

Respite

Below is a list of respite opportunities available this month.  For more information about respite care, read our previous post.

Sammy’s House Respite Care

Sammy's House

Sammy’s House is a daycare for children who have special needs.  They offer respite care to anyone in the community (whether they are enrolled in the daycare or not) at least once a month.  Caregivers are trained to handle a variety of conditions and provide a safe environment for all children.  Visit sammyshouse.org for more information.

 

Upcoming respite dates:

Friday, April 4th from 6:00 pm – 10:00 pm
***Don’t forget to bring dinner!***

Saturday, April 19th from 10:00 am – 2:00 pm
***Don’t forget to bring lunch!***

Respite registration is done on a first come, first serve basis. Respite costs $25.00 for your first child attending and $8.00 for each subsequent child. Payment is cash or check, due when you drop your child off for respite.

Contact Irina, respite care coordinator, with any questions at 512-453-5258

 

Georgetown Parents Morning Out

This FREE respite opportunity was organized by our very own Speech Pathologist, Katherine Garcia.  Pre-Registration is required, please see flyer for more details.

Georgetown Parents Morning Out

Open Hearts Respite Care

Open HeartsOpen Hearts is a free, monthly respite care program for families with children with disabilities or special needs and their siblings, ages birth to eleven.  It is held every third Friday of the month from 6pm to 10pm at Fellowship Church of Plum Creek, 160 Grace St. Kyle, TX 78640 (Some dates may vary due to holidays or spring break).

While at Open Hearts, your child will be cared for by loving, trained volunteers under the support of professionals in the fields of special education and developmental therapies.

Remaining 2014 Respite Care Dates

  • April 18, 2014
  • May 16, 2014

To register, please download this form -> (Open-Hearts-Respite-Application) and follow directions for submission.

Plagiocephaly and Decorative Cranial Helmets

What is Plagiocephaly?

Plagiocephaly is a condition that causes a baby’s head to be flat or misshapen.  This can occur due to a child’s positioning after birth, decreased space in utero, or during delivery if a child gets stuck in the birth canal.  If a child’s head is misshapen during birth or delivery, the condition usually corrects itself within a couple of months.  If not corrected, a pediatrician may recommend a cranial helmet to help properly shape the head.  Positional Plagiocephaly occurs when a child spends too much time in one particular position, such as laying on their back or favoring one side over the other.

You can prevent plagiocephaly by adjusting your baby’s position during sleep and encouraging Tummy Time to give the back of the head time to adjust.  It’s no secret that some babies do not enjoy Tummy Time, but it is critical to their development and in preventing conditions like Plagiocephaly.  If a child does not tolerate Tummy Time, try smaller increments more often throughout the day.

Decorative Cranial Helmets and Bands

If your child does end up needing a cranial helmet, rest assured that you are not alone! Helmets and bands may seem like a scary, sterile medical device at first, but there are now many options for personalizing helmets to showcase your child’s personality and make them less scary! People may not know how to react or what to say when they see a child with a regular cranial helmet, but when the helmet is decorated, there is a lot more opportunity to inform them about Plagiocephaly, as they are more likely to approach and ask about the decorated helmet.

Here is a sample of Paula's amazing work!

Here is a sample of Paula’s amazing work!

You might have seen the recent article in the Huffington Post about Paula Strawn, an artist who paints cranial helmets for children. Strawn is incredibly talented and the service she provides is invaluable.  You can see more of her designs on her facebook page.

Fortunately, we have some options local to Austin and Texas that can help you with your child’s cranial helmet as well!

Cranial Technologies has an office in Austin that provides cranial helmets and can also help with decorating.  You can visit their website for tips on DIY decorating or connecting with someone local.

Bling Your Band is located in Texas and has an online store of vinyl stickers to choose from to personalize your child’s helmet.

 

 

Photo from one of the Wrap Buddies parties

Photo from one of the Wrap Buddies parties

Wrap Buddies is probably one of the coolest options nearby. The founders of Wrap Buddies also own Wrap 360, a company who wraps NASCAR racecars and helmets.  The owner says that one day a man came in to his shop with a cranial helmet and asked if it could be wrapped.  Upon learning that insurance often does not cover the full cost of the helmet (which can be over $3,000) the owner did not charge the man.  He now continues to provide this service FREE of charge to other families!! Wrap Buddies has designated days for “Wrap Parties” where families come to the shop and the wraps are made while they wait.

The parties are in Dallas, but they also have partners located throughout the state, including one in San Antonio.

WrapBuddies will also vinyl wrap other medical equipment!

 

DIY options include purchasing stickers at a local craft store, using acryclic paint, and modpodge. Check Pinterest and Instagram for some inspiration! Do you know of any other local options for decorating cranial helmets? Be sure to let us know!

 

 

 

Cerebral Palsy Awareness Month

CP AwarenessThis month is also Cerebral Palsy Awareness Month and today we are wearing green to show our support for our friends and patients who are living with Cerebral Palsy. Cerebral Palsy (CP) affects 1 in 500 newborns, making it one of the most common childhood disorders.

What is Cerebral Palsy?

CP is a neurological disorder that appears in infancy or early childhood and permanently affects muscle movement. CP is usually caused by damage to or abnormalities in development of the brain that can hinder the brain’s ability to control movements. Some of the symptoms exhibited by individuals with CP include:

  • Lack of muscle coordination with voluntary movements (ataxia)
  • Stiff or tight muscles – hypertonia (spasticity)
  • Weakness in one or more arm or leg
  • Walking on toes, a crouched gait or a “scissored” gait,
  • Variations in muscle tone, either too stiff or too floppy
  • Excessive drooling or difficulties swallowing or speaking
  • Vision Problems

CP is one disorder that has a vast spectrum and varies greatly in severity from one person to the next. There is no way to definitively assign a clear prognosis.

Many parents who have a newly diagnosed child might be told that their child will never walk and will be wheelchair bound or that their child’s development will be so severely delayed that they may not succeed in school. While some children may be wheelchair bound, there are also a lot of individuals who do reach milestones they never thought possible like graduate high school, graduate college, marry and have families, and learning to walk and talk.

With proper medical care, therapy and a loving home environment full of hope, the possibilities are endless. Being wheelchair bound might seem a little scary or hopeless, but we have seen countless families whose children in wheelchairs are still very joyful and can join in family outings with some accommodations.

Types of Cerebral Palsy

There are different types of CP based on the extent, type and location in which the individual is affected. CP is primarily classified based on the movement disorder involved:

  • Spastic (stiff muscles) – this is the most common type of the disorder causing individuals to have stiff, rigid movements.
  • Athetoid (writhing movements) – characterized by slow and uncontrollable writhing or jerky movements of the hands, feet, arms or legs.
  • Ataxic (poor balance and coordination) – this affects an individual’s balance and depth perception. Children with ataxic CP will often have poor coordination and walk unsteadily with a wide-based gait.

Treatment

There is currently no cure for Cerebral Palsy, but there are treatments that can improve a child’s capabilities. Therapy is a cornerstone of CP treatment and is best when started as early as possible.

Physical Therapy – will be most critical in the therapy plan as PT works on the muscles that are directly affected by the disorder. PT regimens can increase muscle strength, improve balance and coordination, and help to prevent muscle contractures. Overall, Physical Therapy will help to improve an individual’s mobility.

Occupational Therapy – will help to hone fine motor and self-help skills giving individuals tools to succeed in day-to-day activities such as dressing and going to school.

Speech Therapy – will help an individual develop communication skills and can also help with feeding difficulties. Some individuals may have severe limitations on speech and a Speech Pathologist can help with communication systems such as sign language, picture cards, and Augmentative Communication.

There are a number of alternative therapies and treatments available, but it is best to discuss those options with your child’s physician.

Conditions Similar to Cerebral Palsy

Some signs and symptoms related to Cerebral Palsy can also be associated with other conditions that are less common. Other conditions should be considered when there is an absence of difficulties at birth or shortly thereafter that would cause the developmental delays and abnormalities, or if the child’s abilities are beginning to deteriorate. CP is permanent, but it does not usually worsen with time. If your child begins to have a deterioration of skills, further diagnostic workup may be required.

Dopa Responsive Dystonia (DYT5). This rare genetic disorder occurs due to impaired production of a neurochemical called DOPA. This results in a progressive increase in muscle tone and physical limitations and can resembles cerebral palsy. Patients with this condition typically do not have cognitive challenges but may have progressive and severe spasticity or dystonia. A large number of these individuals also have variation in their tone during the day. These children and adults often respond to very low dose DOPA supplement and have significant improvement in their symptoms.

Another genetic disorder that is confused with cerebral palsy early in the course of the disorder is Glutaric Aciduria Tpe 1. The distinguishing feature of this condition is progression of the movement disorder with the child developing chorea (rapid random movements). Also imaging of the brain reveals a distinctive pattern of abnormalities in the temporal area. While reversal of the symptoms is not anticipated, specific medical interventions may limit further progression of the condition.

Other slowly progressive disorders are occasionally misdiagnosed as cerebral palsy. These are predominantly rare diagnoses that have other symptoms that help separate them from individuals with cerebral palsy. For example, several have an associated loss of cognitive skills. These patients do not have a stable, predominantly motor problem but instead deteriorate across several domains (e.g. cognitive, behavioral, fine and gross motor). Imaging (MRI preferably) may reveal changes that are consistent with the diagnosis. Examples of such diagnoses include:

  • Metachromatic Leukodystrophy
  • Pelizaeus-Merzbacher disease

[Source: http://www.mychildwithoutlimits.org/understand/cerebral-palsy/diagnoses-similar-to-cerebral-palsy/ ]

Inspiring Individuals With Cerebral Palsy

There have been a number of individuals in the news recently spreading CP awareness and proving that limitations can be overcome. Here are just a couple:

Bobby O’Gurek

Robert “Bobby” O’Gurek of Summit Hill is handicapped. But don’t tell him that.
O’Gurek, who has cerebral palsy, he rides around his town in a motorized wheelchair and talks with a speech output device.
But despite this, the Lehigh Carbon Community College graduate runs his own computer website business, he is an active member of the Diligence Fire Company in Summit Hill, he actively works election polls, and he has given speeches in New York City, Pittsburgh, Boston, and Washington, D.C.
Monday night, O’Gurek received the 2014 “Shamrock Award” from the Irish-American Association of the Panther Valley during a banquet at Kelly’s Irish Pub in Lansford. [Read More]

Maysoon Zayid

Maysoon is a comedian with Cerebral Palsy who delivered an amazing TED talk recently. You can check it out here: http://www.huffingtonpost.com/tedtalks/watch-this-woman-with-cer_b_4959970.html

 

Where Can I Get Help?

Austin has many resources available to families living with Cerebral Palsy.

CP Family Network has extensive information about CP, local and national resources, a community forum, and more information on treatments available.

CPals is an all ages social group started by parents seeking to meet other families with CP and getting the children together for play groups and activities. In fact, there is an Easter Egg Hunt for ALL abilities coming up on April 5th! Visit CPals on Facebook to keep up with the latest information about upcoming events and meetups.

CPATH Texas is a group helping families navigate the path with Cerebral Palsy. Their goal is to spread hope and awareness and help families with the transition in to adulthood for their child with CP.

If your child or someone you know has Cerebral Palsy, today, we celebrate with you! Together we can continue to bring awareness for Cerebral Palsy.

Sources:

http://www.ninds.nih.gov/disorders/cerebral_palsy/detail_cerebral_palsy.htm
http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm
http://cpfamilynetwork.org/cerebral-palsy-diagnosis